Loxo 305

[UKfulloflife]

Not sure how long the Loxo trial has been running - my 3 years are up next May. Is there anyone who has actually finished their 3 years already? If so, are you still on the drug, or are you back on watch and wait (voluntarily or otherwise?).

Thanks

[Nicebaps]

Hi

I'm on it but not as part of a trial. Just started my 3rd cycle and things are going well. Not sure how long I'll be on it for as I have ITP as well which is causing a few issues. I'm also in the UK.

[UKfulloflife in reply to Nicebaps]

Sorry to hear that, but glad things are going well. So it must now be available generally, which is good news. Thanks for that!

[Nicebaps in reply to UKfulloflife]

Still not available as still under trial. Got it on compassionate grounds direct from the manufacturer as I've tried everything else.

[Accordion in reply to Nicebaps]

Great to hear Nicebaps! I have ITP too, nice news that you are doing well.

[SofiaDeo in reply to Nicebaps]

In the US at least, veltuzumab was given orphan drug status for ITP and it may work somewhat on CLL. I was in an early trial for CLL use, it halted my aggressive variant but didn't regress me. I was considered a "failure" after a few months of my lymphs not growing but not going down and kicked out of the trial. It was given subcutaneous so no "infusion reaction" issues. IDK if it's available in Europe anywhere. It may help the ITP and halt your CLL to boot.

pharmabiz.com/ArticleDetail...

[CLLerinOz Administrator Volunteer in reply to Nicebaps]

I've just posted about a review article that deals with the issue of ITP that may be of interest to you.

healthunlocked.com/cllsuppo...

[Dahlia7]

I was on the LOXO 305 study for 19 cycles but unfortunately relapsed this past January. I had no side effects. I am currently on MS-553 after falling LP-168. It’s been a wild ride. I hope you have a really long long remission on LOXO. Good luck. Tony

[Billarina in reply to Dahlia7]

Hello Dahlia, may I ask how long it was for you between stopping Loxo and your relapse?

[Dahlia7 in reply to Billarina]

I relapsed while taking the.drug after 19 cycles. It stopped working for me.

[steve_canada in reply to Dahlia7]

Hi Tony , is each cycle 28 days? So it would be 532 days?

[Dahlia7 in reply to steve_canada]

Yes each cycle is 28 days and your math correct.